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Hello, anyone able to point me in the right direction, any similar cases?

ChelbieCChelbie Posts: 2
edited 05/22/2015 - 2:26 AM in New Member Introductions
hello!

First time using forums, so struggling to navigate to the right place

Basically looking for people with similar cases to mine who could offer up a little advice or just your story of how your diagnosis/treatment was/is handled as I feels little let down so far.
also a little explanation on what my diagnosis means as I don't understand what the medical terms even mean.

So here it is....

I'm 18 , 19 next monththat according to my doctors changes a lot of my options, as I'm too young for most of the help he could offer

Although my lifestyle has been drastically changed due to too much pain to be as active as I used to be and now most of the social activity I was a part of, eg. Bmx and mountain bike enthusiast, now impossible, leading to considerable isolation and depression, they don't seem to care ,,

Anyway here's my medial history

-fell down the stairs at my home in September 2013,
Was in terrible pain but didn't not go to hospital due to bad bruising I gave it the old see how I go attitude

-3 months later the bruising had disappeared but was still in pain everyday but was bearable

- 4 months after the incident I went to see my GP regarding the bad I was having in my lower back and buttocks, was simply told that I most likely had bruising to my bones and May last upto 6 months was sent away with some low strength paracetamol.

-After 8 months since incident I was still in terrible pain that just got worse and worse, so my GP reluctantly referred me to the hospital for some x-Rays yet when I called the hospital to arrange my appointment I was refused, the radiologist said I was too young for such unnecessary X-rays, he said that it would emit me to radiation that he didn't believe I needed as no matter what the results there was no pain management options for tailbone problems, with this information my GP refused to refer me to anyone else for 2nd opinions

-Then August 2014 whilst playing lightly on a in ground trampoline with my little brother I was knocked over and with it only dug far enough into the ground for a child to bounce, my weight caused me to hit the ground under the trampoline and of course I fell on my buttocks/ lower back

I was taken by ambulance to a&e as I could not walk or stand without the support of 2 people, I was taken by stretcher
, upon arriving at a&e I was given priority and high doses of some painkiller, I went numb and could not feel any pain but still could not stand I had X-Rays but was told it wasn't possible to X-ray the tailbone area and there was no damage on the higher bit of my back that was xrayed I was then simply sent home still unabl to walk unaided

After this incident I began to have terrible pains in my thighs too mainly my left leg hurt and I could only sit whilst leaning to my right side or I get a unbearable shooting pain up my spine and down my legs

I also occasionally probably once a month have what seems to me to be heavy bleeding from my back passage when passing stool, I'm finally having a flexible sigmoidoscopy tomorrow for this,

I have had one MRI in November 2014 that I was then told in December that I have bilateral L5 PARS defect
Coccyx fracture l4/s1 minimal displacemed height reduction causing foraminal narrowing and lysis At l5 grade 1 listhesis, none of which I understand
Also been told I have sciatica and have been prescribed gabapentin

Oh also before my MRI was done whilst I was waiting they checked my so called clear X-rays from my trip to A&E back in August and found two very clear fractures and did not understand how my A&E doctor missed them!
When my MRI results came back I was told that the problem had got worse.

A pelvic and axial mass was also found on my MRI but my consultants would not discuss this as it needed inverstagating as over the 3cm safe size yet I have had no test although I have followed this up, I do not know if it's connected to my back problems,

Have been now told by spinal specialist after I requested a 2nd opinion that some sort of epidural injections into my lower back could be the best treatment for me but against although I've chased it up and made numerous calls to both hospital and GP still nothing has been set in motion to help me,

Sorry that I have rambled and I understand I can get no guaranteed medical help here,

It would just be nice to be directed to someone in similar circumstances as I feel as I'm personally being mistreated by my health professionals but maybe they are doing what they can

I also just need more explanation as to what my diagnosis means as I do not understand 90% of the medical jargbon that they tell me via letters of consultations

Again sorry to take your time but thank you for reading,

I'm also still being told by my GP that it will heal in its own time with no intervention, and he has refused to give me any stronger painkillers as I am "too young" even though I'm struggling more on a daily basis to do even the simplest things such as get out of the bath ( I do have to helped 70% of the time) or out of bed now have an extra mattress just to make it easier so I don't have to bend as much,



Thank you for taking the time to read and any help is greatly appreciated
Chelsie.
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Comments

  • Your plight sounds awful. I feel for you as I had similar misdiagnosis problems. You must persevere. It's your pain, your coccyx, your future, not theirs. It may feel like pushing water uphill with a fork but you must never accept any doctor saying that they can't find any reason for your pain, and certainly keep ringing and ringing to get those appointments and treatments arranged.

    As for pain relief from your GP, they have no right to keep you in pain unnecessarily. Tell them the prescription you are on are ineffective and that you need their help to get the pain under control. 'You are too young' is utter rubbish. The problem is that GPs are being asked to justify prescribing strong opiate painkillers, even cocodamol 30/500, to their healthcare trusts every time they do it and they really haven't got the time to do so, so they avoid it. If your GP won't help you, just sit there and tell them how it is affecting you, your life and your abilities. Take as much time as you like. If that doesn't work, ask for an urgent referral to the pain management team at the hospital.

    My GP was very reluctant to put me back on opiates when my disc reherniated and almost crippled me for life. Even when our most respected neurological hospital discharged me in January on oxycodone and oramorph for breakthrough, she was still bumping her gums about it and referred me to pain management.

    Fast forward five months and I finally got to see the pain management team. I had been through and recovered from fusion surgery and had tapered off all meds. I was seen by a consultant anaesthetist and she spent 3/4 hour with me going over all my injuries, pain and surgeries over the last 18 months.

    She has written to my GP and told her that a) I am currently pain free, b) all my previous pain was anatomically diagnosed and valid, c) that I was so quick to get off all meds after each episode that there is no evidence of possible addiction, d) that I am competent to recognise radiculated pain caused by back injury in future and e) should I report to her with lumbar and associated sciatic pain in future, I am to be immediately prescribed MST and Oramorph, titrated until pain relief is effected, and an urgent referral to either an orthopaedic or pain management consultant is to be made.


    Don't give up, be strong.

    Steve
    L5-S1 herniation. Both knee meniscus tear. L4-5 herniation - 2 x nerve block injections. L4-5 discectomy. L1-2 nerve block injection. L4-5 reherniation - TLIF fusion. 2016: L1-2 and L5-S1 retrolistheses and multiple facet joint degeneration.
  • SavageSavage United StatesPosts: 5,941
    Wow.....you've been through a lot.

    It's good that you saw spine specialist. I would definitely follow up with him and get some relief.

    You do need to advocate for your self. Continue to tell doctor all your symptoms and limitations you have ....with even activities for daily living.....as you described addition to bed so you don't need to bend so.

    Re your diagnosis jargon......please talk to doctor. Doctor should be able to explain matters clearly to you. You and doctor need to be on same page.....and you need full info so you know how to better care for yourself.
    On this site..we members are restricted from trying to interpret test results or diagnosis.

    On this site there is.......search.....top upper right on page. You can type in your concerns and you may be led to past posts, articles, videos......information you may find beneficial. You may find info that leads to more questions you have for doctor.
    Never hurts to have a list of your concerns and questions in preparation for your doctor visit.

    You're not alone! Hang in there!
    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • itsautonomicitsautonomic LouisianaPosts: 1,933
    To young to prescribe pain killers or raise dosing. Pain does not discriminate but in some drs minds it does . The majority of people would taper off meds once the anatomical issue is fixed just as the above poster did so it's a shame while you suffer and wait to heal you are forced to grin and bear it.
    I've been through same thing for multiple health issues and many could not grasp that my age was reason but when the words "you are to young" comes out of mouth as reasoning there isn't really much more to be said. Undertreatement occurs all the time and it's tough out there for pain patient as you need every reasource to beat the pain and get your life back. Sorry for that situation and what you are going through
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Thank you all for your encouraging replies, as I mentioned in earlier post I went to the hospital yesterday for a flexible sigmoidoscopy to try to find further problems but I am now left in agony, I was meant to be sedated for the procedure to to the fact that any pressure leaves me in a lot of pain, but the sedation just didn't do a thing (may be due to the fact they didn't weigh me or know any medical history of my fractures until I told them, I'm now back home but currently bedridden till the pain settles and the cramps calm, still no results and test was inconclusive and I've been finally booked to see the pain management team next month, on the day before my birthday, fabulous lots of prodding poking and a lot of pain ready for my birthday aha, anyway the hospital refused to prescribe me anything to help with the pain, but hopefully my dr will fit me in for an emergency phone conversation consultation and prescribe me something tomorrow,fingers crossed.

    Looks like once I feel good enough to get up out of bed I'm gonna try my hardest to get a appointment in with my doctor, and express my concerns once again, think this time I may have to take my father with me, my dr seems to have this thing where if I'm alone or with my mother he seems to look down at me like I'm an exaggerating toddler having a tantrum, yet my father or brother takes me and suddenly I'm a serious case :/ there busy working slot though,

    I'm rambling again sorry guys, but thanks again,
    Guess I'm off to find out some more info on these diagnosis

    Thank you all and goodnight! Or morning!

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